Online Program

Role of asthma coalitions in patient and community engaged research

Monday, November 2, 2015 : 9:10 a.m. - 9:30 a.m.

Stacy Ignoffo, MSW, Chicago Asthma Consortium, Chicago, IL
Molly A. Martin, MD, Department of Pediatrics, University of Illinois at Chicago, Chicago, IL
Maureen Damitz, AE-C, Division of Pulmonary and Critical Care, Stroger Hospital of Cook County, Chicago, IL
Sharmilee Nyenhuis, MD, University of Illinois at Chicago, Chicago
The Affordable Care Act and subsequent Patient-Centered Outcomes Research Institute (PCORI) have elevated the importance of involving patient and stakeholder perspectives in research and medical care. Chicago researchers frequently call upon Chicago Asthma Consortium (CAC) as an independent advocacy organization to provide this link to patients, caregivers, and other stakeholders. The CAB serves as the external advisory board to the CHICAGO Trial, which is part of the PCORI Asthma Evidence to Action Network.

To respond to this emerging need, CAC developed an Asthma Community Advisory Board (CAB). The CAB is a group of 11 patients, caregivers and community stakeholders from across Chicago that convenes to provide input into research and service needs around asthma. The purpose of the CAB is to: (1) help researchers understand the outcomes that are important to people affected by asthma; (2) provide researchers with input on their research and links to the community; (3) inform the community about the asthma research; (4) provide insight into service and policy/advocacy needs. The CAB creates a link between those working in asthma and the community to ensure that the community/patient perspective is included.

To date, the CAB has provided input into 4 research projects and identified gaps in asthma management and education tools, in addition to serving the CHICAGO Trial. Eventually, the CAB will help disseminate research results and help facilitate links with various end-users of research in the community. This presentation will discuss the sustainability and replicability of this model which provides support to patient-engaged research.

Learning Areas:

Advocacy for health and health education
Chronic disease management and prevention
Public health or related public policy
Public health or related research

Learning Objectives:
Discuss examples of how asthma coalitions can engage patients and stakeholders in research Discuss sustainability models for community-based asthma coalitions

Keyword(s): Community-Based Research (CBPR), Community-Based Partnership & Collaboration

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am an experienced public health professional with over 15 years of experience and a successful record of developing and implementing public health programs and initiatives and building coalitions and collaborative projects. As leader of the Chicago Asthma Consortium, I have increased engagement in CAC (among traditional and non-traditional partners), improved outreach to the community, facilitated and increased research-community partnerships, and led the development of the Asthma Community Advisory Board.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.